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Thursday, October 2, 2014

What It's Like

*Editor's note: The following was a conversation I was lucky to be privy to between my two sons, over the course of about twenty minutes. I've omitted several things for privacy, and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons' permissions before publishing this.

"Morgan," Bay asked, "what's it like to be you?"

The question was asked as the boys finished dinner and I sat away from them, reading a book. I marked my place and quietly listened.

"Well," Morgan said, "it's confusing. You know I'm an autism kid. Noises are big. Clothes have to be soft. Smells are hard." He went back to eating, apparently satisfied with his answers.

"But, Morgan, what's it like? Why is it confusing to be you?"
Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

"There are all of these sounds and thinks (thoughts) and I can't just pick one. Can you?"

I sat, stunned. Morgan's never talked to his father or I like this. He's never really been able or rather, we've never been able, to get him to talk to us like this.

"Morgan," his brother started, "why do you script? Why do you use Thomas so much and love him so much?"

"I just do. The stories are in my head, 'cause I'm a narrator. I love Thomas, he's my friend. He's a very useful, cheeky engine."

"But you know, other kids don't like him as much, right? I mean, aren't you worried about bullies? Why do you talk like that (meaning nasally quality/monotone and scripting)?"

"I don't care if they don't like him, Mama says he's mine to love. Mama and Daddy say bullies just don't get hugged enough. I told you- I talk like this 'cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!" (note the script)

Me: "Morgan, is there anything that's really hard for you?"

"Yeah, people when they give me too many directions. That's hard." Having my own struggles with this, I agreed with him. "Going new places used to be bad, but sometimes it's fun now. But not too much. Rounding (numbers). Noise. Making people understand me."

"Haircuts used to be really hard, right?"

"Yep, but they're not so bad now. The hairs still feel like poking on my skin, and I'm scared my ears'll be chopped off." "Mama won't cut your ears off-" "But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!"

Me: "What would you make people understand?"

"I need to chuff (when he makes train noises and moves his arms in a circular motion, bent at the elbows). Ya know, trees stim? I'm a good boy and really useful. Don't talk about me in front of me. Kids shouldn't make fun, the grown ups, either. It's mean. People should understand people." I started tearing up.

"It's big like a cave. It full of noise and echoes. I don't like the gym. It's confusing and fussy. Everyone is very busy all of the time and, when you're not busy, they give you more work. It's all work, work, work. Mrs. C's room is great. That's where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It's quiet in there, I can tell train stories. Have you heard of the (slips into a Scottish accent) twins, Donald and Douglas?"

Bay: "How come you don't have friends come over?"

"Because this is my home. I have school friends. They're at school."

"Don't you want to play with other kids at home? Other than me?"

"Sometimes. It's not important to me. I like you, Bay."

"Any other questions?"

"Do you like being autistic, Morgan?"

"Do you like being redheaded?"

"Um, I don't know how to not be redheaded."

"Well, Bailey, I'm an autism kid. I don't know how to not be one. I like being me, even the hard parts."

17 comments
:

Oh, sweet mercy. I'm sitting here in a puddle of my own tears after reading this. SO, SO rich and insightful and...I can't even find the words to explain how deeply this has touched me today. And how desperately I wish I could know some of these same things about my own sweet boy.

This is just...just IT! I love this. I love that Morgan could be so open with his brother! And you know, I think my son would agree with him on many, many points. I teared up a bit reading this, because it was really like hearing some of my son's own thoughts. Thank you, thank you, thank you, for sharing. I plan on sharing it, too. Because, well, it's just too awesome not to share.

I apologize if this comes through again. But THIS. THIS is amazing. Thank you for sharing this with us..and thank you to Morgan who felt comfortable enough with his brother to share it!! My son would agree with Morgan on many points. I teared up a bit, because, well, this is like hearing some of my son's thoughts...truly. Thank you!! I'm sharing this because it is too awesome not to share.

My comment didn't post. Thank you Morgan. And thank you Jessi for sharing this. I am so impressed w your memory and details. I can't remember a damn thing. This is a beautiful conversation and so cool that you caught it.

Morgan sounds like an awesome kid. I'm an autism adult, and I totally get how he says it's hard to explain what it's like to someone who doesn't experience things the way you do. I give his brother huge credit for caring enough to ask. And I'm also a huge Doctor Who fan. Tell Morgan I say Allons-y!

This is just a FANTASTIC conversation! I'm an adult with autism and I know exactly how hard it is to explain yourself to people who don't experience things the way you do. Like why the smell of cooked fish makes me have to go outside until the air clears because it's stinky, or how people can stand using public bathrooms where every little noise echoes. I'm also a huge Doctor Who fan, tell Morgan I said Allons-y! He'll get it ;)

Hi Jessi,I have just come across this in 2015! And I loved reading it. There is such low awareness about autism in my part of the world - Malaysia and Singapore - and I would love to share a link to your article on my FB page. I will tag you on it! I'm sure my family and friends would find this so enlightening and love reading this. BTW, my daughter Lauren is 12 and she has autism. Thank you for sharing.